My Deep Brain Stimulation (DBS) Surgery

Part 1 The initial Surgery

My Deep Brain Stimulation Surgery

Just Another Hole in My Head

Part 1: The Initial Surgery

On Thursday August 7, I went in for a haircut. It would not be the finest haircut I've ever had, but it might be the most important. The haircut took place in Dr. Jamie Henderson's Examining room and a few minutes after his assistant, Traci Hornbeck, finished cutting my hair, he shaved my scalp in five spots, numbed the spots with lydocaine, and then proceeded to screw 5 anchors into my skull using what looked and sounded like a screw gun from a construction workers toolbox. All this was in preparation for the next day when they would be mounting two towers onto my head that would act as guides in inserting two probes into my brain. It may have been the worst haircut I've ever had and perhaps the most expensive, but undoubtably the most significant; because this haircut marked the beginning of my Deep Brain Stimulation surgery that was intended to relieve some of my symptoms of Parkinson's disease.

The surgery would entail drilling two holes in my skull allowing two probes to be inserted deep into my brain. The probes would later be connected, by wires run below the skin, to a stimulator, that would be programmed to send electrical signals to the probes, helping to relieve some of the debilitating symtoms of Parkinson's disease and the side effects of the medication.

The operation required that I be off medication for twelve hours before surgery. In my case, I knew that meant no sleep that night. Normally, patients do not stay in the hospital the night before surgery, but I asked to because I knew I wouldn't sleep and wasn't sure I would be able to get to the hospital in time for the 5:30 AM operation, having been off medication for that long. Every time I would start to fall asleep a nerve would start to pull on a muscle in my leg and then pull harder and harder until finally my leg would jump and the process would start over again. So I waited and waited and eventually someone came to wheel me into pre-op.

After a quick visit with my wife and kids and then the anesthesiologists, they wheeled me into the O.R. and transferred me from the gurney to a narrow bed in the operating room and they were strapping me down. I felt them taping a plastic shield to my forehead and realized this was something the surgeon was using as a barrier. I had been told that I would be awake for part of the operation and that I would have a condom type of catheter. I was also provided a massage therapist. The idea is that this is a long operation and you are conscious for much of that time and you have to lie still. The massage therapist can help keep you comfortable during that time. The massage therapist is also someone who can answer simple questions or refer them to the appropriate person. These questions might include "Is my catheter connected, because I have to pee?"

I had been told that the drilling of the holes is very loud, but it must have been done while under anesthesia because I was unaware of any cutting or drilling. It wouldn't be until I left the hospital, that I finally got to see the two rows of staples that were used to close up the two long slices in my scalp.I soon became aware though of Dr. Helen Bronte-Stewart, whose first question for me was if I was ready to have fun. I told her I was already having fun and we got along just fine the rest of the day. Her role in placement of the probes depended on getting precise measurements from moving body parts that were attached to sensors in what I am guessing is sort of a reverse engineering technique, where the movement of the sensor tells them where to put the probe.So with each placement of the probe she would go through a series of movements and yell out the corresponding movement. For example, she would say "right hand, deflection" then move my hand back and forth several times; or "right arm, rotational" and then rotate my arm several times. Then she would pick up my leg and yell out a command move my foot back and forth or move my leg back and forth. She would go through the same sequence, over and over on the left side, then on the right side. Then she would have me hold my hand in the air and twist it back and forth for about a minute until she told me to stop. I was lucky, the probes were placed in the right spot on the first try on one and the second try on the other. That was good because I was getting tired.With the operation complete, or at least that portion of it, they wheeled me into the recovery room. I was one of maybe twenty patients in hospital beds, all recovering from some operation and in various states of pain. They turned me over to a woman who may have been a nurse or a Dr. I'm not sure, but she wasn't happy. There weren't very many people in the room that looked happy, particularly the guy in the bed next to mine. He was her patient too. I don't know what he was in for, but he was crying in pain almost the whole time I was there.I told the nurse I had to pee again. She handed me a plastic bottle and said "Here, let me know when you're done." At this point, all modesty was out the window and I lifted the sheets put the bottle between my legs and carefully filled it. It was difficult at first because it wasn't easy to see if the bottle was tilted in the right direction, but once I got the hang of it, I was OK.I was in the recovery room for about two hours, most of which was spent getting a room ready for me in the hospital. Finally they wheeled me to my hospital room where I would spend the next 24 hours.I remembered talking to the anesthesiologists before the operation. They told me that anesthesia sometimes causes nausea and pretty soon after arriving at my room I started to feel sick. I was happy because I had completed the first step in what I think will be a life changing operation. I was in some pain from the operation. I was surrounded by my wife, my parents, my brother, my daughter, and other members of my family. Somehow I was overwhelmed by the emotion of the moment and I began crying uncontrollably.They came in two at a time. I think that was what the hospital allowed. I remember my parents were there and they said something funny and that made me laugh, which made my stitches hurt. So I asked them not to make me laugh. Then mom said "This reminds me of camping", which made me laugh even harder, because that was the last thing, of which, this reminded me.. That made mom feel bad, so I tried not to laugh for a while.There was actually a good reason that this reminded mom of camping. On our first camping trip we went to Lake Tahoe and my brother got sick and had to go to the hospital in Carson City. They had to leave him there overnight and it was very traumatic for him. Remembering that incident helped me to stop laughing anyway.I was starting to feel nauseous again so I let my parents go back to the waiting room. Susan, my wife, came back in and I tried to rest. There was some kind of mix up in my food order so it was late before I had anything to eat and even though it was pretty bland I ate every bit of it. Everyone went home and I watched the opening ceremonies of the Olympics on TV. I was feeling a little queasy again, when one of the bed handlers came to take me for a C-scan. I knew this was coming, but now didn't seem like a good time. I expressed my concern that I might not make it to the scanner, and the next thing I knew I was being wheeled down the hallway toward the scanner. We took the scan and on the way back to my room I threw up. Fortunately I had a bucket with me. The bed handler didn't even slow down. They gave me a fresh gown and feeling better, I slept through the rest of the night. The rest of my visit was relatively uneventful and I went home the next day.

Part 2: Implanting the Stimulator

Two weeks later I was scheduled for my second surgery; implanting the stimulator in my chest and connecting it to the probes from the first surgery. This was done on an outpatient basis. I was under anesthesia the whole time. When I awoke the surgery was done, the nurse was talking as I came out of the cloud of anesthesia. She offered me some saltine crackers which I think was the driest thing I've ever tasted. I must have been dehydrated because the crackers did not moisten at all until I had a drink of water.

The stimulator is about 3" x 3" by 1" thick and is sewn into a pocket of skin. The batteries have to be changed every few years and it will require surgery when that becomes necessary. It's a little tender, but not bad when you consider they have cut a pocket into my chest and installed this device. I would think it would hurt more than it did.A week later I went back and had the stitches and staples removed. That felt a little more comfortable and looked better too.It would be another week before they actually turned the stimulator on; one month after the initial surgery.

Part 3: Some Background

It had been 4 months since my initial appointment with the neuroscience department of Stanford University. My objective was to get some relief from the progressively oppressive effects of Parkinson's disease.

I had reached the point where medication was no longer effectively controlling my symptoms, while the side effects were getting farther out of control. Too little medication and I was unable to walk without fear of falling and unable to sleep regularly. Too much medication and I could not control my movements. My right arm would gyrate out of control. The times when everything was normal were few and far between.

In order to have the surgery, I first had to go through a series of tests to evaluate weather I would be a good candidate for the proceedure. One day I went through the tests while on medication and another day I did the same tests being off medication. I did finger taps and leg taps and hand twists. Then they put me in “the box”. This is a device that the patient stands in and several tests can be done involving balance. One shows a picture with the patient standing in the middle, surrounded by six dots. One at a time he leans toward the dots, keeping a straight posture, trying not to take a step. In the next test the patient stands still while the box moves. This is not as easy as it sounds. In the third test, the floor moves while the patient tries to stand straight. I think they got me on that one.

The next set of tests for the evaluation was called something like neuro-phsychological and there they did tests to evaluate memory and logic. I think I did OK on the logic part, but probably not so good with the memory stuff. I guess I did well enough, because they approved the proceedure.

Part 4: Turning on the Stimulator

After four months of evaluations, appointments, surgeries, waiting and anticipation, the big day was finally here. Today they were going to turn my stimulator on. I imagined myself running down the halls and jumping for joy as the shackles of this oppressive condition were removed. They would flip a switch to activate the Medtronic device that would relieve me of all my Parkinson's symptoms.

Naturally, it couldn't be that simple. There were settings that had to be made and each probe had it's own set of adjustments. First we ran through every possible adjustment and ran through a set of tests for each one. Then the programmer chose the best adjustments for each side and ran through the tests again, just to be sure.

This was all done while off medication.

Adjusting the stimulator takes a lot of skill. It's not just a matter of turning it on. The trick is to get the most benefit while accounting for all conditions. What helps one symptom, may be detrimental to another. Apparently it can take three or four appointments before they get it dialed in to the optimum effect. Oh well, at least I have four years before the next Olympic trials. For now I have achieved some relief in my Parkinson's symptoms. I have far less dyskinesia. I am walking better and sleeping better and I am using less medication. This may not sound like much. I am not cured, but the daily frustration of Parkinson's disease has become less intrusive and that is a blessing all by itself.

Part 5: The Reward

It was a short walk, as walks go. It had seemed so far away when they first made the announcement. It was hard to understand how this moment was already here. At this point I just wanted to be sure I was putting one foot in front of the other without tripping on Sarah's dress. The bridesmaids were were all in the room, waiting for their moment, while the groomsmen seated the guests. I peeked into the room to see my daughter in her dress and was stunned by the way she looked. "What do you think, grandpa?" Was asked by one of the bridesmaids. "Beautiful," was all I could say.

A light breeze chilled the guests as they waited patiently after being seated. They were treated to a view of evergreen trees made greener by the deep blue sky above and Lake Tahoe in the background below.Suddenly it was time, wedding music began to play. The bridesmaids lined up with their partners and began the procession down the aisle until there was only the flower girl (Natalie, my granddaughter), the ring bearer and me and Sarah. A handsome young man, the ring bearer was having a hard time holding the pillow that held the ring. It would not stay balanced on the one hand while the other hand was holding on to the flower girl. I showed him how to bunch up the bottom of the pillow in his hand and he was ready to go. Down the aisle they went and then it was only me and Sarah.It didn't seem possible that so much time had passed to bring us to this moment. Wasn't it just the other night that I was reading her a bedtime story and she was asking me to read it again and again.We waited for the music to change again. Then one step at a time we proceeded as the faces in the audience began to appear. The seats were fuller now than when I had peeked out earlier. I kept my concentration on my gait as we walked slowly down the aisle to where the groom was standing, alongside the minister and the bridesmaids and the groomsmen. I shook his hand and kissed my daughter, just like the rehearsal. I found my seat, next to my wife and watched the rest of the ceremony.It wouldn't seem like such a short walk would be such a big deal and thankfully it wasn't, but as little as a month earlier it might have been much different. The effects of Parkinson's disease and the medications used to treat it had reached a point where without medication, I could barely take a step; and with medication I could walk, but my right arm and leg would gyrate out of control for hours at a time.The Deep Brain Stimulation Surgery that began six weeks earlier with two probes being implanted into my brain would reduce my dependence on medication, improve my basic level of ability, and reduce the side effects of the medications. How the procedure accomplishes even one of these functions, I don't understand.Two weeks after the initial surgery they implanted the stimulator into my chest and connected it to the probes with wires just below the skin. They would not activate the stimulator until two weeks later, just two weeks before my daughter's wedding.The initial adjustments with the stimulator are done with the patient off medication. That meant another night of trying to sleep while my legs twitched. This time it wasn't quite as bad. In fact I was able sleep some that night and I was able to walk slowly to where I was being tested the next day. I had expected to need a wheelchair.They ran me through the usual tests before turning on the stimulator. First the box where they have the patient stand up straight, then lean in various directions, then the walls move in various directions, then floor moves in various directions, all with the goal of seeing where you lose your balance. Then there are more tests that are repeats of previous tests such as finger tapping, leg tapping, hand twisting and, of course walking.Now it was time to turn the stimulator on and when they did I didn't feel any different. When they ran through the tests again, however, I immediately noticed a dramatic difference in my ability to perform them. They used the results to determine how to adjust the initial settings on the stimulator. In adjusting the stimulator, they have to allow for the effect of the medication. If they adjust the settings too high some of the old side effects may return.The stimulator comes with a controller. When put up next to the implanted stimulator, the controller can turn the stimulator on and off and even up and down to a limited extent, but the major adjustments are done by the nurse who is trained to make adjustments using a separate controller that adjusts the strength and frequency of the signals being sent from the stimulator to the probes. The nurse showed us how to turn the stimulator on and off while we waited for the medication to take effect. There are certain circumstances where the stimulator needs to be turned off and other circumstances where the stimulator can be accidentally turned off and may need to be reactivated, so we both needed to know how to use it.It has been eight weeks since the initial adjustment of the stimulator amd four weeks since I went in for a second adjustment. My next appointment is in two more months. I have been told that it can take up to six months before they get the ideal adjustment. Overall I have eperienced considerble improvement in some areas and have been frustrated with the lack of improvement in others. The biggest difference has been a reduction in the dyskinesia that had become very difficult to deal with. I have had good deal of improvement in getting in and out of chairs. My voice is stronger for the most part.Getting a consistent stream of medication is still a problem. Carbidopa/levodopa is the most effective drug used for Parkinson's, but it has limitations. One is that there is no even delivery system. You take a pill and it slowly breaks down in the stomach (depending on what else is in there), gradually getting stronger until it reaches maximum effectiveness, then gradually slows down until you are due for your next dose in about four hours.To improve the effectiveness of carbidopa/levodopa it comes in a "long acting" or "controlled release" formula that generally has the same effect but is spread over a longer period of time (4-6 hours).To further complement the carbidopa/levodopa therapy there is a group of drugs called "agonists" that mimic the effect of carbidopa/levodopa. These drugs include "mirapex" and "requip". They help extend the effectiveness of carbidopa/levodopa. They have been helpful in allowing me to sleep through the night. However they have been linked to compulsive behavior in some cases. They generally are not strong enough to be used alone in advanced cases. The uptake on these drugs is also different from carbidopa/levodopa, further complicating the the dosage formula.This may be an oversimplification of the situation, but I think it gives you a general idea of some of the problems in taking Parkinson's medications. The trick is to take enough to help get the patient moving, but not so much that they become dyskinetic and to make that situation (we'll call "normal") last as long as possible.The DBS has helped in finding that spot, but there is still a ways to go.

Comments 25 comments

Sherry Gore 7 years ago

Thanks ever so much for sharing your experience with us. My daughter (18) was just referred for this typer of surgery 2 days ago by her neurosurgeon. She is taking a hospice dosage of pain meds, yet has intractable pain.

Your story took some of the fear away for me of the possibility of her having this surgery.

Thanks again, and I hope you are doing quite well by now and have a greatly improved quality of life. God's blessings to you!


Sherry Gore 7 years ago

I also wanted to say, your writing is excellent.

Besides our interest in your story because of our own situation, your story was written in a professional manner.

Thanks again.


Dream N'Dean profile image

Dream N'Dean 7 years ago from Sunnyvale, CA Author

Thank you very much. These are my first comments. I'm glad you were able to get something out of it and I hope the surgery is of great benefit.


Rhonda 7 years ago

Hi,

I'm glad that your surgery went well. I had DBS on 9/29/04 and I am having my 1st battery change tomorrow.

I was 35 when diagnosed with PD and I am now 45. I wish you the best of luck with everything. I fully understand what you are going through. Keep the faith that a cure is around the corner.

Best wishes.

Rhonda


Patti Knight 7 years ago

Thank you so much for your article. It was from experience and not from the doctors. We are looking for answers and what to do next. I was asked to go with my friend to a DBS meeting with his neurosurgen and later with the neurologist because after 16 years, the side effects of all the meds had its toll.

The operation was just as you described but the effects were quite different. The operation was performed right before Thanksgiving last year. There are two side effects that have not been resolved. Immediately after the first surgery, Bob's eyelids would not open. I believe the term is eyelid apraxia. Unable to go home after the first surgery, we placed him in a rehab facility until the 2nd surgery and then he went to another rehab facility because of the confusion and eyelid apraxia. It is now almost 6 months later and the closed eyelids is still a very big problem. Sleep deprivation at night was another big problem. I am looking for other patients with these problems and how they solved them. The effects of Parkinson's do not show so in that sense the operation was a success but the fact that Bob needs caregivers 24/7 is our concern. Before the operations he lived alone. We are scared and truly desparate. Thank you. Patti


Dream N'Dean profile image

Dream N'Dean 7 years ago from Sunnyvale, CA Author

I am sorry to hear about the problems Bob has had regarding his DBS surgery. There is always a risk with any surgery, but that is one effect of DBS that I would not expect. I find it interesting that the eyelids were affected before the stimulator was turned on with apparently no improvement with adjusting of the stimulator or the medication. I hope you find some answers to these questions and that the condition can be corrected..

Dean


Julie 6 years ago

Thank you for posting this. My dad is supposed to go through this surgery for his Parkinson's at the end of November. I am cautiously optimistic about it. It is nice to hear about someone else's experience.


Derrick Jones 6 years ago

I had DBS surgery on the 14th. of Feb.05 for Parkinsons the surgery was a bi-lateral(both sides of brain at the same time were operated on) DBS. The difference for me has been great, at first it was like I was cured. Then after about a year I reintroduced some medication to help with mild symptoms. Now after nearly 5 years it continues to work well ,even though the Parkinsons continues to progress. As far as adjustments to the implants one side works a little better than the other. If anyone reads this and has experienced a battery change ,could you please tell me what to expect it is almost 5 years and must be getting close.

jarrickjones@shaw.ca


dorothy desano 6 years ago

just had both sides battery replaced, second replacement for right side and first for left.could have had the new ones that are rechargeable but dr,said takes a while to learn method of recharging and i needed batteries right away. anyway the pain after was quite unforgiving, had it dec.22 had to stay over night and when we got home i felt like i was going to pas out. all this was from hospital 2 week seay and 2 week for rehab due to crohn's disease. i feel ok now but boy what an experience!


nutuba profile image

nutuba 6 years ago from North Carolina

Good article! I hope your fight against Parkinson's continues to go well.


Sharron 5 years ago

Thank you so much for sharing your experience. Because of my increasing problems with tremors due to Parkinson's, I am now in the process of qualifying as a candidate for DBS. Your article has been very helpful.


edith king 5 years ago

I had DBS the 10 of DEC, things went very well ,today I,m going to have my power turned on , wish me Blessings. and thanks.


Doug Moum 5 years ago

I'm having DBS in a week for essential tremor. I can't wait! Today I was trying to use a needlenose pliers and was having a hard time doing it. I hope eventually the DBS will take care of it. Anyway, I really thought your article was informative. Thank You!


mary ann smith 5 years ago

Thank you so nuch for sharing; I'm at the evaluation stage...I abroke down shen I got to the part about the

wedding; we have one in Oct. I stopped walking down the isle to get communion cause the balance/walking is so bad. Glad you are noticing improvement,

Mary Ann


dorothydesano 5 years ago

Hello-it's me again. having both sides,may 31 with the self charging batteries this time. not looking forward to it as i had one side done going on two years ago. oh well these are to last for nine years and i am now 76- so maybe i won't have to worry about another replacement. not trying to be funny or curt but with Parkinson's nothing lasts forever! keep smiling i am! dorothydesano


caitmo1 profile image

caitmo1 5 years ago from Lancashire England

I am having D B S in October so I was very interested to read your account of your operation. I am curious to know how well you are now - is there still some improvement in your ability to do things. Like you when the meds are working I can walk but have terrible dyskenesias - I tire myself out with the constant uncontrollable movements. When I am "off" ie no drugs in my system or they are not hitting the right place, then I can't walk - I have no strength in my hands or legs and the toes on my right foot curl under and take ages to go back to normal - extremely painful. I find getting down on my hands and knees sometmes alleviates it but it's not the thing to do in the local supermarket!

Thank you for writing about your experience.


Lee 4 years ago

What is the normal recovery period after the DBS surgery please?


Lee 4 years ago

How long were you in the hospital after the DBS surgery?


caitmo1 profile image

caitmo1 4 years ago from Lancashire England

Hi Lee.

On 31st October I had DBS. I had just the one operation and I was under anaesthetic for the whole time ie eleven and a half hours. I admit to feeling terrified before the operation. However although I was on the High Dependancy unit for the night by lunchtime the next day I was transferred to another room and managed to eat a little lunch and then dinner later on. The following day I was allowed home. I did not need strong painkillers and was amazed at how well I felt. I left hospital 54 hours after arrival.


Vikram 4 years ago

Thanks for sharing your experience and it's quite a brave journey. I hope things are going well for you and wish you the very best in your adventures.


DM 4 years ago

Hi,

Many thanks for your article! My dad (68) is going in for DBS in fews for Parkinsons as well. Here is South Africa, they do it all in one operation. We have been told that they will implant the electrodes and the device in one day. The device also is said to have a 10 year battery life which is a great improvement from the older models. He will have an MRI scan under anesthetic and then 2 days later the operation. We are all very optimistic and positive that the DBS will elevate the parkinson symptoms at least until they find a cure which i am sure has to be found soon!!!

Thank you again for sharing your amazing story. How are you doing now after 3 years after the DBS?


need answers 3 years ago

My husband just had DBS for the 3rd time. the first two trys had complactions so weren't finished.

But this time the probs went in a week ago. I don't know this person that has come out of surgery. Eye the eye lids are hardly open. But the worst is he is so confussed and can't do simple things he did use the phone or TV remote. He knows who is who but cant controll his bladder,can't do anything unless I tell him like he is 4. We had the 2nd stage done today. I asked the Dr. he said give it another week see how he dose. We live 200 miles from teh hospital on the way home he opened the car door going down the road. if his seat belt was not on he would have fallen out. Can anyone tell me is this part of the healing processes. Help


Ruth Packard 3 years ago

Thank you so much for your post! My husband will be having DBS in two days and you have answered many questions for us. We have been encouraged by your words!


Dream N'Dean profile image

Dream N'Dean 3 years ago from Sunnyvale, CA Author

I'm sorry to hear of the problems you have had with your DBS. I hope tha with patience and time things will get better.


Katherine 3 years ago

I have a client who is getting having this surgery soon, and as an office we are trying to think of a good gift basket we could give him to help with his recovery. Was there anything that helped you, or any good ideas you might have? I feel terrible being so ill-educated on the matter.

Thanks!

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